My 30 year journey with meningitis

Back in 1980 at the age of 19 I had meningococcal meningitis.

In the previous days I felt (and commented to many friends at the time) better than I had for a long time, I had lots of energy, no headaches, no rashes or any other kind of symptom, until I woke one morning to a red pillow stuck to the side of my face, thinking I had bitten my tongue or some such thing overnight I ambled along to my doctor (Dr Popper, what a lovely name) who after a very brief examination sent me in a taxi to the local hospital in Cardiff, I remember handing the doctors letter to the nurse and then waking up 3 days later, this was probably the scariest part of all for me as I was awoken by 'something' entering the room I was in, I say something as the person was covered head to foot in white disposable garb, I don't mind admitting I screamed (well I would have if any noise had come out)and tried to jump out of bed, needless to say all I did was get my head 1/2 inch off the pillow before giving up on that idea.

From that time on I suffered with migraines for many years, reduced sensation, IBS and a number of other things that I put down to life in general, in 2001 I suffered a 3 month period of debilitating migraine storms, at that time someone mentioned that they were probably connected with the meningitis, previously to this I had been unaware of any potential long term effects.

After having spoken to a very nice lady on the helpline today I am now aware that a number of 'conditions' I have suffered over the years may (or may not) be associated.

My next step is to get a referral to sort things out and perhaps get to the bottom of questions going back over 30 years.

4 Replies

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  • How can you ever be sure what is caused by having Meningitis and what isn't. It's a mystery to me. I had spastic bowel before the meningitis and since I had my gallbladder out that has somewhat settled down ,although my digestion capabilities are altered, I, too, suffer with recurring headaches but I have a pre history of migraines. It's all very confusing and I think you can drive yourself crazy trying to relate all this to having meningitis. What can be done if the Drs don't know either? Good Luck, Jeffery

  • Hi Jeffery

    While what you say is true, in my case *if* my problems are related to the Meningitis then that may give my doctor is aware (which he now is) it will help him make more sense of my symptoms and maybe, just maybe he may be able to offer me something that is more effective for me. The lesson I have learned over the past few days is make sure your doctor has ALL the facts, my computer records only went back to 1986 and hence my doctor was unaware that I had suffered Meningitis and so had not considered that my problems could be related and maybe ruled out some treatment or other

  • Very interesting, Sprout! I find it particularly interesting that you had MM but didn't have the excruciating pain I had...the pain that caused me to call an ambulance. The EXCRUCIATING pain in my legs & feet lasted for about 6 weeks. (I was in the ICU for those 6 weeks and was then transferred to the regular ward for the remaining 6 months total of then bad but bearable leg & foot pain.)

    Now, 35 yrs later, I still have foot pain and can wear only ONE particular shoe...a ballet style flat with an elastic band that holds my shoes on...which is necessary because the shoes have to be 1-2 sizes too big, in order to not touch my extremely sensitive toe "areas."

    That foot pain problem is definitely from the MM.

    But another health issue is my low resistance to every upper respiratory virus/bacteria that comes along. I'm in a fairly large & varied very active social group and someone is frequently coming down with something during the winter months. (I live in Florida.) Bam, I'm always next!

    Is my low resistance a result of the MM with complications of DIC? The doctors don't know. Most have never even met a MM/DIC survivor.

    The big change I've made over the 35 years since my attack is to always STAY HOME AND REST everytime I now come down with something. My previous dislike of "missing out on something" has been replaced by "Missing out is a tiny sacrifice compared to another bout of MM."

  • I may be jumping the gun on posting this, but I feel it is necessary to anyone who is reading this that may have recently had a bout of meningitis.

    I am just over 5 weeks discharge from the hospital for aseptic meningitis and 7 weeks since admission. Today is the first day, I have not taken a hydrocodone or tylenol. Granted, its only 10:30 in the morning, but I feel like the headaches are easing up a bit and the overall malaise is diminishing.

    The last two nights, I have only taken two 325 mg tylenol before bed, rather than the hydrocodone 5/675.

    Basically, I want to tell everyone that my headache is not as "present" today and that it hasn't been as "present" the last couple of nights either.

    I too suffer from sinusitis/asthma/bronchitis bouts and beleive a bronchitis bout is what brought about the meningitis.

    I completed a zpack on Sunday, got a headache on Tuesday and was in the hospital the following Sunday. My local doctor beleives the zpack weakened the bronchitis and it moved to the meninges, which is why it took til Sunday for me to feel it necessary to go the ER.

    None of the viral cultures ever came back positive and they never got a positive result for bacterial infection either, but my bodies response to the antibiotics was so good, that it had to be bacterial meningitis. The white count in the spinal fluid was only 5 but the antibiotics I took the week before probably had something to with that.

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